Posts: 10

Topic: Treatment working!

My mom was diagnosed with CC March 9, 2011. The original mass of 18x18x18 cm and was pressing on the IVC creating decreased blood return and extreme fatigue. Her journey has been tumultuous, however, it has been successful.

1st line - April and June 2011chemoembolization with doxirubicinShe has 2 TACE therapies each was successful. At the conclusion of the second the mass had decreased to 10x10x11 cm

3rd line - April 2012 beganSurgery for Alloderm spacer at MD Anderson (1st known for CC)IMRT 6 weeks receiving 70GryFollow-up showed disease regression, but not resolutionTumor continued to shrinkNo chemo or radiation was needed for about 5 months

4th line - September 2012restarted Cis/Gem every 2 weeks and added TarcevaFollow-up showed disease stability until allergic reaction to Cis

5th line - November 2013changed to Oxaliplatin/Gem every 2 weeks due to allergic reactionFollow-up showed tumor is necrotic and continues to regressTumor size now 9x8x6 (Ca 19-9 is increasing during the treatment due to tumor necrosing and releasing Ca 19-9 and shows reactive/necrotic lymph nodes)

I type all of this because she is been going to MD Anderson since Sept 2011. They learn something new every time we go. The oncologist was showed that her tumor marker was increasing, however, the MRI showed significant tumor necrosis. This phenomenon occurred after her chemoembolization and was transient following the tumor dying. 3 treatments have proven to be successful from a tumor necrosis standpoint. Chemoembolization was the first to decrease the tumor bulk and relieve her symptoms of decreased IVC, the second successful treatment was the IMRT to the tumor. Following IMRT she was able to have a treatment free interval and felt great. The third successful treatment has been systemic chemo with Ox/Gem. With the tumor continuing to show increasing areas of necrosis, this has proven to be a successful treatment. However, one warning is that local oncologists did not think the Ox/Gem treatment was working due to the increasing Ca 19-9, they recommended to stop chemo. We decided to continue the treatment until we returned to MD Anderson for the follow-up scans. The oncologist at MD Anderson was amazed at how well the Ox/Gem was working and also surprised that the Ca 19-9 had continued to increase in spite of the scans showing the tumor was dying. Had we stopped chemo when the local oncologists recommended, this would have changed the outcome of the follow-up scans.

I cannot stress to patients enough the importance of getting to a large teaching facility that has experience treating Cholangiocarcinoma. We have met 3 other patients that have all lived longer than the predicted survival rates. My mom has outlived every prediction given to her. Her initial prognosis was 3 months. She has survived and is feeling great at 3 years. I quit reading studies about CC, because she has surpassed all of the published data. I am in the process of writing an article for the treatment of Cholangiocarcinoma, since very little data is available. Please know there are options!

Re: Treatment working!

That is awesome! Love to hear success stories with this disease. And think of how we are changing the numbers. As more and more CC patients live longer those that are diagnosed in the future won't see such grim numbers and maybe, just maybe, no one will have to be told they only have 3 months to live.

Here's hoping to continued successes.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Treatment working!

Hi there,

Many thanks for sharing what your mum has been and is going through right now. And superb news that her treatments are working! My fingers are crossed for further treatment to continue to work as well and please keep us updated on how everything goes. Thanks again for sharing.

My best wishes to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Treatment working!

Thank you for sharing this awesome and inspiring story of success with us. The underlying message is to continue to look for treatment options, consult, consult with physicians "very" familiar with this disease and be open to interventions considered out of the "norm." The overriding news is that your Mom benefitted so well and is doing fantastic.Hugs,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Treatment working!

Thanks so much for sharing your mom's amazing story and taking the time to do it in such detail. Information that will hopefully help others. Hoping that we will be seeing and hearing more of these success stories in the future.My best wishes to you and your mom.

Love & Hugs,Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice. You should always seek the advice of your physician or other qualified health care providers.

Re: Treatment working!

How absolutely wonderful for your Mom! Your story is really inspiring. You said it has been three years, and she is feeling wonderful. Is she still receiving chemo treatments, and if so, how often and how well does she tolerate them? I just started Gemcitabine only once a week a three week course, and am feeling really tired. Don't know if I want to continue after the first 3 weeks.

Re: Treatment working!

Thank you for sharing your mom's story, it's inspiring for us as my dad's recently diagnosed with CC as well. My dad had 4 rounds of chemo recently and his tumor only decreased 1 cm from the original 18 cm. Did your mom's CC spread to any other organs other than the liver?

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